11 months on PTU

I saw my endo this AM. I have been on PTU now for 11 months. At my last visit, we bumped up my dosage as I had jumped in to the subclinical range. The numbers have moved back to where they should be so we will stay at the higher dose. I have been having some calf cramping over the last couple of weeks and my endo said to be sure to call if I start experiencing increasing hypo symptoms and we will bump up my labs (currently scheduled for 7 weeks out).

Right after the dosage change last time, I felt pretty lousy – fatigued and overwhelmed for nearly 3 weeks. I don’t know if it was hyper symptoms catching up with me or if it was just the dosage change as I always seem to have a couple week adjustment period. It was just a much harder one the last time. Overall, I am feeling much better now but I must admit that I preferred the way I felt on Methimazole my last time I was on an ATD. I sure wish I hadn’t had a reaction to it. I feel better but not all the way well.

Today we discussed where I am at with treatment and what he is thinking. He has never had anyone sustain a remission when stopping ATDs prior to 12 months. He says 18 months or longer has been better. I asked if I was on a higher dosage (200mg AM & 200PM) than what we ideally would want to be on if we were thinking we might be headed toward remission. He said it is on the higher side. He also considers the size of my gland which is full/upper limit and my initial T3 and TSI levels.

We discussed both RAI and TT. He thinks TT is underutilized here in the US and that we are in an area with plenty of excellent surgeons so it a good choice here which avoids the longer ups and downs of RAI. Bottom line is that we will wait a little longer before we decide but I maybe making a definitve decision over the summer.

On a side note, my pharmacy keeps having to combine my prescription from different manufacturers or can only partially fill my total so that I have to go back to pick up the rest. I realize it is not a commonly used drug but it’s not like that don’t know when I’m going to need a refill (they even call me). Sheesh.

And, finally, thank you GDATF for providing this forum and the wonderful facilitators. This has consistantly been a safe place to gather different perspectives and support from people who have ‘been there, done that’. I cannot express how beneficial it has been for me.

Laurel